[tri-med] Re: [tri-family] Re: I'm new on list and this is our story
- From: "Karen Schuler" <karens@xxxxxxxxxxxxxxxx>
- To: <tri-family@xxxxxxxxxxxxx>
- Date: Tue, 1 Jan 2002 08:21:21 +1100
----- Original Message -----
From: "Michelle Wilson"
>> I do
> not see how it would affect the non trisomy baby.
Hi Michelle,
I can answer part of this for you.
Twins share more than just growing space and what happens to one in utero
effects the other as well. Its a complex situation and so
much can happen.
First the easy things to explain.
Twins have to share the same food source which is part of why twins are often
smaller.
Twins also tend to be born earlier, that is not go to term. Again this makes
them smaller than the average baby. When one of the
babies has a trisomy this makes the situation a lot harder because as you know
trisomy babies that do go to term tend to be (but not
always) smaller to start with (IUGR). So the average weight of a full term
trier is say 4 pounds, a prem trier less than that,
usually around 2 pounds. With the added twin factor that could mean even less
than 2 pounds which will effect the babies ability to
survive regardless of the problems the trisomy has caused. T-13 babies tend not
to be as small as T-18 babies though.
Parents also have to consider the non trier as well. Because the odds of
survival for twins is reduced regardless of chromosome
problems. Twins are also at greater risk of having other problems such as CP,
blindness etc. When one does have a chromosome
anomaly, it is actually reducing the chances for the healthy twin by making the
healthy twin smaller, probably born before term etc.
These are the relatively "minor" issues of twins. The biggest problem can be if
something happens to the tri twin before term, that
is the lovely term "fetal demise". As you all know the majority of our triers
do not make it to term, regardless of our choices,
they actually die in utero and the parents miscarry. That means when you are
carrying twins that there are a variety of scenarios
that are not pleasant.
You could miscarry both babies, so loose the healthy twin as well as the trier.
You may be far enough along that the healthy twin would be born prem, and
smaller than the normal prem. Prem babies, particularly
prem twins tend to have lots of post natal problems and are at a higher than
average risk of ending up with problems such as
blindness and cerebral palsy. (hence the reason mums of twins usually end up on
bed rest trying to get the babies as big as possible
before delivery). Depending on the problems of the trier, you may be
sacrificing the health of one twin for the other who has few
chances of surviving.
The two worst scenarios are that you may end up with the trier not causing a
miscarriage. So you have one baby in the womb who has
died and if this is later in the pregnancy your body cannot deal with the fetus
who has died (by reabsorption etc) This can then
lead to infection etc which effects the healthy child. Some of the oldies will
remember Denise who hosted the listserv for some
time. This is what happened to her. Alison (the surviving twin) was born with
severe CP after the demise of her twin in utero.
Rarely, but possible you can also have a situation arise where one twin takes
all the nutrients from the other (twin twin
transfusion - more complex than I am making it sound). Its possible that the
trier could "take" the nutrients from the healthy twin.
All these are possible and very real scenarios even without knowing what
problems the trier has. Personally I would hate to be in
Susan and Simon's position. Its hard enough being faced with things that are
"routine" in a tri pregnancy let alone making decisions
when twins are involved.
I also have had the privelege of speaking to Susan off list briefly, so I know
that she and Simon, like all of us, love both their
children very much, and actually went to greater than average lengths to have
their precious babes. So this is not any easy decision
for them and the risks are still very high for selective reduction. I also know
that in the country where they are the options and
choices open to them are not as great as they are for most of us on the list.
My heart goes out to them both, and I would love to
hear more about their babes.........
I feel the capacity to care is the thing which gives life its deepest
significance.
- Pablo Casals
Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line
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